The things I miss – 2 year, 2.5 month update

Hello everyone!  It’s been a few months since my last blog post but it’s time for another update from your stomachless friend.

The surgeon told me that it takes about a year to recover from a total gastrectomy.  Since I had a few complications post surgery,  I was a little behind.  I’m now two and a third of a year post total gastrectomy and although I think I am still improving, there are things that I just shouldn’t do or eat anymore (although, I do cheat sometimes but accept the concequences).    I’ve decided to compile a list of things that I have particularly been missing over the past few months.

– Ice cream – 

I miss eating a full single or double scoop of ice cream.  Even a “kiddie” scoop can give me issues but sometimes I take one for the team.   I also miss choosing whatever flavour I want sugar loaded or not.   Now I read all the labels and choose the one with the least amount of sugar and the most amount of protein (i.e. Nut filled). 

– All you can eat Sushi restaurants –

I tend to order off the a la carte menu these days. I also have to make careful decisions on which ones to eat as the rice takes up a lot of real estate in my intestine.  I also miss eating sashimi. It’s just not the same when you have to chew it a whole bunch of times before you swallow. 

– Choosing a meal at a restaurant without considering the concequences – 

Is it on a bun? Is it heavily breaded?  Is it deep fried? All of the above will result in brain fog. Does it have a lot of leafy greens or heavily cream based? Prepare for bloating!  I often choose meals heavy on the protein side.

– Purchasing new foods without reading the label at the grocery store –

If I want to choose a new food to eat, I always read the label.  If glucose is the 1st of 2nd ingredient…pass.  Too many additives…also pass. The result is abdominal discomfort. 

– Hamburgers and hotdogs with the bun –

This is especially hard because it’s BBQ season.  If I eat the bun, I often can only eat 1/4 of the burger.  It’s just too filling and it also gives me abdominal discomfort and brain fog. 

– Sandwiches – 

I have yet to eat an entire sandwich to date.   Again, the bread causes issues.

– Starbucks –

I still go to Starbucks and usually just order the regular coffees or tea.  But recently I had a good chat with a Starbucks employee who gave me ample suggestions for beverages that would be less sweet.  The passion fruit iced tea lemonade without any sweetener has been a win for me. I have started to combine cold tea with lemonade at home and it’s been great.  Also, ask them to make your drinks without the syrup (or less syrup). It’s basically liquid sugar.   This will open up a whole new world of opportunities.   

– Being able to function on an empty stomach – 

If I don’t eat every 2-3 hours, I start to fade quickly.  When I had my stomach, I could miss meals and be okay. I would be hungry but I could still function.  Now when I miss a meal, I start to get tired and if it goes long enough I start to feel unwell.   Sometimes I just don’t feel like eating all the time.  Food is medicine. 

Whenever I find myself missing these things, I remind myself that I am so fortunate to have the opportunity to stop stomach cancer before the cancer stopped me.  In the grand scheme of things, all of these things are so minor compared to all those fighting a battle who did not have this opportunity.  Ice cream vs. Stomach cancer…I’ll forgo that 2nd scoop. 

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Hold that bun! (I also didn't eat all of this food but got 1/2 way!)

30 days of Yoga – a 19 month update

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For the past 30 days I have participated in a 30 day yoga challenge and it has been a wonderful experience.  Challenging at times but overall mentally and physically rewarding.

I stumbled upon it one day while looking for a nice stretching routine to follow.  Lo and behold, it was the 1st of December and I decided to take the challenge and perform all 30 days.

I’m a mover and a do’er. I like to go-go-go. Early recovery taught me that you must relax and recover or your body will rebel.  Believe it or not, I was more flexible in my  legs and shoulders in the months after surgery than I had been in years.  I was relaxed and rested.  I had lots of time to think about my life because I couldn’t do much else…haha.  Over the past six months I’ve been feeling better and better and have been ramping up again.  Increased work hours, increased activity, jumping back to pre-surgery life.

In turn, my body has been returning back to the way it was as well.  Increased tone and tightness secondary to every day activities.   This yoga challenge made me stop, slow down, reflect, and stretch for 20-30 minutes a day.

The other benefit to doing the yoga was that is stretched out areas that had been affected due to surgery.  There are many fascial trains that were affected and yoga allowed me to stretch them and release tension and tone.  I also believe it helped me to break scarred tissues that remained from the surgery.

The creator of the 30 day challenge is about to release a 30 day yoga camp in January and I am planning on continuing this practise because….well I can now touch my toes!

Another activity that I have re-started post surgery is indoor rock climbing.  I have been off and on climbing over the past 5 years and felt the itch to return.  I boulder as well as top-rope.  Bouldering is performed on a large rock wall without a harness. There are crash mats below you and you are climbing lower to the ground.  Top rope involves a vertical ascent while wearing a harness.  Another person (belayer) is on the ground and will take up the slack in the rope as you ascend.

Rock climbing has been great because it is a full body work out and really challenges the core.

At this point in my recovery I’m feeling 80-90% there based on the day.  I’m still careful about what I eat and how much I eat but overall things continue to progress.

Thank you to everyone who has been supporting me and following me on this blog over the past two years.  Recently, No Stomach for Cancer has revamped their website and have started a community.   If you are part of the community, please feel free to add me: Cytosine Deleted.

I wish you all a Happy New Year and I look forward to what 2016 will bring.

 

It’s okay to have a bad week – an 18 month update

Early last year,  I blogged about Kubler-Ross’ five stages of grief.  It was more surrounding about my recent diagnosis of being CDH1 positive.  It’s applicable to a lot of life events and mourning the loss of your stomach definitely qualifies.

For some reason I had a difficult week a few weeks ago.  I woke up on Monday feeling extremely fatigued.  Not just tired but just not myself.  My weekend wasn’t too crazy so I couldn’t write that off as a reason.  Being in a healthcare field – I was able to pull myself together and continue motivating all my patients to persevere and deliver effective treatment plans but by night time I was wiped.  I thought I would just go to bed earlier on Tuesday and bounce back.  But same thing happened again on Tuesday.

By Tuesday evening, it all hit me.  My stomach is gone. It’s never coming back.  It unfortunate that I can’t eat certain foods and when I eat something that I can eat and is delicious, I can’t eat a lot of it.  I have to take a plethora of vitamins each morning.  I get lightheaded if I stand up too fast.  I have to wake up extra early so I have enough time to eat breakfast each day.   If I want to feel good for the morning, I have to eat oatmeal for breakfast.  I miss cereal.  I miss my stomach.

Maybe I should have waited another few years to have it removed? Maybe I could have lived my life a little longer with it? And so on and so on.

I don’t like people feeling sorry for me so I kept this all to myself.  Finally, Wed evening, I opened up to my husband and told him that I was having a hard week and that I really missed my stomach.  In a few simple words, he replied,

“Your stomach was going to kill you.  You made the right decision.”

I tell myself this most times when I start to feel frustrated by some stomachless challenges and I can get myself out of the funk within seconds but this time it wasn’t working.  It was good to hear it from someone else.

At the end of the week I randomly stumbled upon this letter that someone had shared on facebook.  It was all too appropriate and the timing was impeccable.

By that Friday I was feeling like my regular old self.

I am not writing this post for people to feel sorry for me. Please don’t. I am writing this to let all those CDH1 positive people out there who have had their Total Gastrectomies that it’s okay to have some time of weakness when you are always trying to be strong.

So following my not so good week, I’ve bounced back two fold. I’ve also made some great discoveries.

Right after surgery I tried not to combine liquids with my meals because it would fill me up too fast and I wouldn’t have room for those precious calories.  However, now I have realized that the more liquid I can consume BEFORE a meal, the easier time I have digesting that meal.  So now I try to drink some clear fluids prior to eating a meal to help get those digestive juices flowing or just prepare my new stomach for what is coming next.

When it comes to sleep, my sleeping patterns have never been the same post gastrectomy.  Some days I’ll sleep 10 hours a night and other times I’ll only require 4-5 hours.  Either way, I feel just fine when I wake up in the mornings.  After waking up at 4am back to back two days in a row I decided to investigate this a little further with my stomachless colleagues (thanks Steve, Rachel and Marne!).  Turns out we all have had this issues and we all figured it was just us.   I wonder if anyone else out there has this same issue?

I’m not so upset about this fact because I can get a heck of a lot accomplished when I wake up at 4 or 5am in the mornings.  I was happy to hear I wasn’t alone.

I stopped drinking Kefir a few months ago because to be honest, I didn’t love it.  But recently re-introduced it back into my diet and discovered that it has helped keep my GI flora happy and healthy.  I now try to drink a half a cup to a cup a day of it.  Kefir isn’t the most delicious but a necessity to staying fresh….if you know what I mean.

I’ve been doing strength training at the gym 2-3x a week and I am finally feeling like my strength is close to pre-surgery level.  I’m super happy that this has come back as I can now carry my entire grocery shop inside in one load.

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The scale hit 118lbs this week and I was stoked. That is only 9lbs off of pre-surgery weight.  I knew it was likely temporary…and it was, but I haven’t seen that number in a LONG time.  I am sure that with continued strength training and continued eating, I will continue to gain weight.  After all, in the last year I’ve managed to gain 11lbs.

And to top it all off, I can now drink plain old water!  I still can’t chug it but it’s now an option. Some days are better for drinking it than others but I’m happy that it’s back on the menu.

It has taken me three weeks to hammer down and get this post out which only means one thing. Life is getting in the way!

Catch you all in a month. Happy Holiday shopping!